Hello!

Hi everyone,

I'm new to all this so bear with me!

Recently been diagnosed with RA just before Xmas (not the best prezzie I could have received!) Am now navigating myself round endless visits to hospital, messing around with meds and generally feeling on information overload! This RA thingy is certainly not a doddle and so much to take in - phew!

I just wanted to touch base with like minded people who understand what it's like and hopefully gain a bit of support, as well as giving some back!

Hope to chat to you soon

Sam :)

20 Replies

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  • Hi Sam,

    Welcome, lots of info on here, and people at all different stages. We share the ups & downs of the disease. Give each other hope,and bytimes scare the c... Out of each other! Lol.

    Looking forward to hearing from you, feel free to let go, we don't judge and there isn't much that shocks.

    Regards, Gina

  • Hi Samcat

    Welcome and I hope you are not feeling to bad, with the ra.

    Looking forward to reading your blogs in the future.

    Take care of yourself

    Sci x :D

  • Hi Gina,

    Yes I'm just looking through it all now - wow! So many people in the same boat and so many suffering much worse than I am.

    It's been a long, long journey for me to get a diagnosis - GP said it was fibromyalgia, no cure and just get on with it!!?? I insisted on a blood test and thank god I did! Pain in both hands, wrists, knees, feet and achilles tendons for me. Normally I'm very active and find it all so frustrating!

    Was initally put on Sulphasalazine but erupted in the bubonic plague! HA! So yesterday, I began my course of the dreaded Methotrexate (just once a week) and am waiting with baited breath for all the lovely side effects (none up to yet...dare I say YEY??)

    My RA nurse is fantastic and has answered my endless questions.

    So it's all abit of a learrning curve for me at the mo and sorry for the ramble!

    Sam :)

  • I have had no visible side effects frm methotrex, but luckily have a lot of hair to start with, my tummy seems ok, take mostly and colic of course.

    Gina

  • Sam,

    Make sure you keep up to date with your GP Blood tests. - probably monthly until you stabilize. I tolerated MTX (20mg/Wk + Folic Acid) for about 18 months - then it started killing my Liver. Well caught by GP via blood tests. Now on 2 weekly Humira self-injection (Doddle) + 5mg MTX/Wk. Some advice if I may.

    1. You now have a brand new lifestyle. Come to terms with it and adapt accordingly. It's not all bad news.

    2. On forums like this, people are free to say what they wish. We all have different thresholds, tolerances and lifestyles. Choose advice and information offered, carefully. ALWAYS discuss with GP RA specialists before you change any medication, diet or activity.

    3 Ask Ask Ask your health specialists. Pester them if necessary and get them on your side. They are not (usually) uncaring and/or aloof. Normally they are simply busy. I am told that I was considered for Humira (Very Expensive) for 2 reasons: (a) My RA was reasonably severe. (b) I showed a positive interest in helping with my own health problems.

    As a Volunteer Driver for the Red Cross, I come across others who are much less fortunate than us. Chin up at all times Sam. Brian

  • Welcome Sam, I'm also fairly new to this site (diagnosed last summer), and I'm finding it's the only place where people truly understand 'cause they're going through it too! There is so much to take in at first, as well as the disbelief that this has happened to you, but there is so much support on here that you'll never feel alone. I hope you get settled with your medication soon, and start to feel much better.

    Trish x

  • Being diagnosed is the start of a massive learning curve - but you don't have to know everything all at once so don't get indigestion trying to absorb all the new info too quick. And there are people on here from US & UK & Ireland so can get answers at different times of day & night. Polly

  • Hello Samcat

    Welcome to the board - It is great to go on and just blog when you are up in the early hours and feel lonely, fed up and in pain. And its even better because people reply and make you feel so much less alone.

    Look forward to hearing from you.

  • Thank you everyone for a welcome and all your lovely and supportive comments. It's great to know that there are people on the same RA planet as me! Wish me luck in anticipation of the lovely side effects of Methotrexate!

    Sam :)

  • Welcome also.. we will all help as much as possible. Nras have lots of great publications which you can contact them for

    Alison x

  • Hello and welcome, sorry your here but glad you found us xx

    There is a great bunch off people with varrying stages off the diease on here so lots off advise can be found from all angles

    Hope you get your head round it all soon it will take time

    take care

    Julie x

  • Welcome from me too.Good luck with your MTX treatment and remember not everyone gets side effects.Hope you're one of the lucky ones.

    Take care

    Julie xx

  • welcome too from me ... im sorry your here too but its a good place to be when your feeling isolated and knowing you can ask what you like when you like and get a lot of support ... this site has helped me a lot ...

    im on salazapyrin and MTX .... was very wary of taking it but fingers crossed im getting there ...

    debs x

  • I'm on mtx,sulfasalzine,and loads of other drugs. I have ra/fibromyalgia,so i understand about gps who tell you to get on with it.

    You are in the best place to learn about ra,and we are all in the same boat,at least this boat won't sink!!

    We are a lucky lot as we all suffer with the same disease although some are worse than others. Some days are good some are bad. We all share in the day to day life with ra. We share some hilairious moments in our life. We need to have a laugh as this disease is heartbreaking at times.

    So welcome,come and share whatever you want to share with us. Rant when you want to as we all have done so at times.

    Sylvi.xx

  • hello samcat this is the best place to be, all the experienced people to point you in the right direction, so you can ask the doctors the right questions, the trouble i find with doctors they can only advise you on tested medically approved answers they are in a awkward position with the prosecution society we live in , good luck

  • Hi Samcat - welcome to NRAS HU - this is a really supportive and illuminating place with excellent people - a place to come that is both refuge and educating and sometimes very cheering indeed.

    I am only a month ahead of you in diagnosis terms - also had a bit of a struggle to get there - it was only about 9 months in reality but the longest 9 months I've ever had. I too was put on Sulphasalazine and like you came out in hives and a swollen neck also.

    I have been on MTX for 7 weeks and no side effects apart from moulting and frizzing hair which I combat by taking more folic acid with my GP's consent. I believe if the toxins are going to make you react badly then you will do so early on and perhaps you are going to be like me and feel fine on it?

    I don't know whether it's working or not but I came off all my pain medicines on Tuesday to see and so far my hands are a bit swollen still, wrists painful still and one of my ankles is playing up now, but no major problems or flare without the anti-inflammatories so it's looking quite good? I enthusiastically followed the rheumy's instructions to the letter and doubled my dose from 7.5 to 15mgs in a week because I was keen to make progress. Now have had to move back down to 10mgs because my GP tells me that my liver Alt is raised and he thinks it was too much of a hike, so advise you to be more patient than I was. But then I don't have a rheumy nurse to turn to and my GP is always booked up or busy on other health board work so I tend to do a lot of research and homework myself in his absence. Good luck and keep posting! TildaTx

  • Hi Sam

    I was only diagnosed in September properly, it took ages and loads of appts and scans etc. Anyway took Hydroxy but side effects too much and went on MTX tablet form which was too harsh to bear with the nausea etc. I am on my 3rd week by injection and it is much better although still get side effects fuzzy head bit of nausea etc but much better than tablet form. It is all trial and error but i feel one of the lucky ones as the medication is working for me as pain gone in my ankles and knees. Main issues are my wrists which if i overdo it can cause a flare up. It is very hard to come to terms with it though as it changes your life. I am hoping to inject myself over the coming weeks so i dont have to go to hospital every Friday morning on top of my normal appts.

    This site is great for support as I don't know anyone who has this so no one to talk to about it and other people just think it is the same as Osteo which of course it isn't.

    Keep blogging as it will help you.

    Deb

  • Hi Sam

    Welcome to club RA! Not as good as 18-30! No actually I got Ra in March and have found this the most helpful site and any time I have a question I ask the Rheumy then come on here too for more informal support. Hope your treatment goes well, get plenty of rest and go with the flow!

  • Hi Samcat,

    I have been diagnosed for 3.5 years but new to this site and so far I have found it really helpful. Kind people and good advice. I re-live my diagnosis over and over again and what a shock it was. But 3.5 years in and I'm still here to tell the tale. Take care and good luck getting started on the meds, Sarah x

  • Hi Sam,

    I have been taking MTX since my diagnosis 18 years ago, though have been monitored and treated with Psoriatic and later, RA, since 1985. Benn tried on virtually everything available at one time or the other. Now have been on the Biologic Simponi for the last 15 months, and seems to be doing OK, especially with the fatique and back pain.

    I also am coordinator of a Arthritis/Fibromyalgia Support Group, sponsored by the Arthritis Foundation, so I am meeting and listening to many people at all stages of their disease. I just met this group here 2 months ago, and they are very helpful and delightful.

    Welcome to the group, feel free to jump in any time, either to reply or make your own blog post. All the best for a successful result to your treatments.

    Loret

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